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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

From the inside out…

Matthew working his way from the inside out

From the inside out…this saying could have many different meanings attached to it. The band Hillsong United on the Live In Miami (2CD/DVD) album has a song by this title. This popular worship song is sung in churches small and large all around the word. We have been living this song and the lyrics over the past six, going on seven weeks as we attend to and sit with our new little boy.

Matthew even gave us a trial run on this subject just a few months ago as he fulfilled his desire to go from the inside of his room to the outside. Rather than use his doorknob, the easier solution, he had to find a more challenging way to do the mundane task of turning a knob and pulling a door. He picked away at the bottom corner of the door until he found a weak spot…from there it was all downhill. Piece by piece he picked away at it producing small, medium and large portions that were thrown to the side as he neared his goal. This was all done in the wee hours of the morning while the rest of us were sleeping. When we finally did hear him he was well on his way to getting to the second layer of the hollow core door…the picture shows it all. Along with his peek-a-boo picture of innocence from the hallway side.

There are different views when you look from the inside out and then from the outside in. We have been stuck in this pattern of hospital, emotional breakdowns, spiritual highs and lows, grace, peace, fear, a needed hug, hope, some sleep, worry…these are the ups and downs of what life looks like after many weeks and without a real clear picture of when we may go home. All of our strength and emotion that has been centered on Isaac and the rest of our family as we try to hold our lives together. To be completely honest, this past week was a test of faith and strength. I cannot completely share in words how hard it is to see your precious little one suffer. How hard it is to see and hear your spouse cry out to God to make it all stop and go away. Sure, from the outside looking in on our lives we can hold it together…what you don’t see is me sitting in the middle of a lake, alone in my fishing boat crying out to God…what you don’t see is Theresa in the car, crying and asking when is it all going to end…will Isaac even come home?

Matthew’s view from the inside out

We have been here before…surgeries, procedures, sectioning, medications, treatments therapies, etc…we have experienced the ups and the downs many times. But, I think I speak for Theresa as well, at this time and this place, he is doing a mighty work…a transformation of cleansing us, breaking us down and changing both of us from the inside out. We are being forced, with permission to be consumed from the inside out. No false front, no mask, no facade of everything is fine. We are advancing from doing some of this on our own strength and stamina and completely surrendering and falling into the Father’s arms. We stumble and fall, we get up and stumble again…but now we are allowing to be caught in His embrace…here are some of the lyrics to a song that has had both of us in tears several times over the last weeks. When hearing it, really hearing it again a week ago…we both felt as though this was more than a worship song meant for a congregation…it was being sung from our hearts as the battle armor is falling off one piece at a time:

A thousand times I’ve failed
Still Your mercy remains
And should I stumble again
I’m caught in Your grace
Everlasting, Your light will shine when all else fades
Never ending Your glory goes beyond all fame

In my heart and my soul
Lord I give You control
Consume me from the inside out,
Lord, let justice and praise
Become my embrace
To love you from the inside out.

Your will above all else
My purpose remains
The art of losing myself
In bringing You praise
Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame            Hillsong United on the Live In Miami (2CD/DVD)

As we are being transformed from the inside out…God is showing up in unexpected ways. Isaac, with no words spoken, no gospel preached, no action even taken, is proclaiming the power of God loud and clear. God is opening doors and allowing people to see from the outside in as we are being transformed and wearing our faith and our actions on our sleeves. We pray that in The art of losing myself that it will bring you praise and bring opportunities to share you. Total reliance on God is not easy and not predictable…whether it means a spiritual lift, an emotional lift and even a financial lift when needed the most.

Isaac after 3 different days of surgeries – sporting his new trach tube, feeding tube, shaved part of head, an IV in his head, new central line port, etc….

We won’t sugar coat the reality of what is needed for Isaac this week…as well as for the rest of the Troupe’s. Isaac had a rough week, we had a rough week…a week that included three different days of surgeries and procedures. There may be more in the near future due to other complications from those procedures and surgeries. Right now the immediate prayer is for healing and no infections of the various sites around his body where there are holes that normally one does not have. Isaac had a tracheostomy to assist with his breathing, a new feeding tube placed in his belly and a new, more permanent line to replace a regular style IV that needs to move every few days. I counted almost 20 pokes from head to toe as they tried to find a new line site…he is sporting a newly shaved area on his head as well as bruises at every spot of attempt…He is still on the ventilator and is kept mildly sedated to allow him to rest and heal. We also ask for prayer for mom and dad…we are having a hard time looking at the future and how we will be able to endure what is ahead, both in the hospital and when Isaac comes home.

If you were wondering what happened to the door…In true Monsters, Inc. fashion (you need to see the movie) I glued every piece back together, then skinned the effected areas with a thin plywood…we had to salvage that door. On the hallway side we have pencil marks with dates that show the heights of each of our kids from when we moved in that house in 1999…it is priceless.

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  • Hrtakt

    I can only say that we continue to pray for all of you daily. Blessings!

    • KevinTroupe

      Arlene and Howard, thank you for your thoughts and prayer. Definately felt on our end!

  • Praying for you and your family today, Kevin.

    • KevinTroupe

      Kent, thank you! We are definately writing a new “chapter” in how we can relate and help other families like our own. Look forward to being able to Speak it Forward in the neat future. Completely believing that we are on this journey for a reason…doesn’t make it any easier, but knowing He is in control makes all the difference.